No child must be without care

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The miracle baby Roona’s story drew international attention the minute her photo was put out by a national news agency. A one-and-a-half-year-old girl born in a village in Tripura, Roona suffers from hydrocephalus, a birth defect caused by a build-up of fluid in the brain leading to massive swelling of the head (about 94cm in Roona’s case).

Her father Abdul, a daily wage earner and Fatema, homemaker, struggled to take care of Roona. After being told by doctors that there was nothing that could be done for her, Roona’s parents had almost given up hope. But once her photo appeared through the news agency, within just a week, Roona’s story was picked up by nearly all media. Help poured in from a crowd-funding group in Norway, a state-of-the-art hospital in Delhi, the royal family of Tripura and various other groups and individuals.

CurleyStreet Media, an independent film production house based in Bangalore, founded by documentary filmmaker Pavitra Chalam, chanced upon Roona’s story and decided to travel to Tripura to better understand her circumstances. “During the final stages of my previous film, Indelible, I came across an article on Roona in 2012. Finding a story is like falling in love, it’s immediate and there really is no turning back. What attracted us to Roona’s story was that in a time when we constantly read about how society is becoming de-sensitised, the very opposite was unravelling in the most unexpected of places. There was no doubt in our minds that the world needed to hear Roona’s story. We didn’t know how, but by the next morning, with the support of our well-wishers and my godmother Hema Hattangady (who also produced our film Khushboo), my team and I were on a flight to Delhi,” says Chalam, the director.

As Roona’s story unfurled before them, they also discovered the poor state of public healthcare in India. Thousands of children are born with birth defects like Roona, but haven’t been able to generate the same amount of interest Roona did.

“Our aim is to create a film that not only does justice to Roona’s story but also creates awareness about how children from underprivileged backgrounds have little or no access to good healthcare facilities. We believe our film will help shape public opinion about healthcare and push for much needed reform in the child health space,” says Chalam.

In their quest to gather essential information and explore different perspectives on the state of the Indian healthcare system, they interacted with leading cardio-vascular surgeons; Dr Harsh Mandar, director, Centre for Equity Studies and special commissioner, Supreme Court of India in the Right to Food case, and Dr Rajeev Tandon, senior advisor for Maternal and Child Health at the NGO Save the Children. “We are also in contact with the Right to Live Foundation which specialises in connecting underprivileged people who need medical assistance with donors and organisations who can lend a helping hand. We have also had parents of other children with conditions like Roona’s reach out to us and share their stories,” informs Chalam.

When they returned to Bangalore after Roona’s initial surgeries, they took stock of the financial realities of telling this story. They decided to take the crowdfunding route so that people the world over could participate in the making of this film. On July 9, 2013 the campaign went live on Indiegogo. Within 45 days, the film managed to raise $ 32,000 through 365 investors. “Within just 22 days Rooting for Roona was officially India’s largest crowdfunded non-fiction film,” gushes Chalam.

The group is now well on its way to bring change to the failing health care sector in India. “Since the genesis of this project, apart from our own research, we have also received numerous emails and phone calls about other stories like Roona’s and associated healthcare issues that we will do our best to incorporate into this film. Our vision is to bring to light as many cases like Roona’s and travel to two more states other than Tripura, in order to understand and document the ground reality in terms of congenital healthcare in this country. We need a total of about $ 50,000 to cover costs. We have raised $ 32,000 through our crowdfunding campaign and hope to raise the rest along the way from corporates, organisations and individual donors,” says Chalam.

The group hopes to complete principal photography by December and will need another 4-6 months for post-production. They are already in talks with television channels but are waiting for confirmations. Aside from this, they intend to raise enough funds to be able to allow this film to travel the film festival circuit. They hope multiplexes will screen the film by way of support to independent cinema.

You can follow the progress of this project and contribute to the cause on www.rootingforroona.org.